How do people feel about their data being shared by the NHS?

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Healthwatch England News

17/05/18

From 25 May, you’ll be able to make a choice about how the NHS uses your confidential patient information for reasons other than your individual care. 77% of the public say they are confident in the ability of the NHS to protect their patient data. Are you?

People’s patient records play a vital role in informing medical research and changes to health and social care. Advances in understanding diseases and developing treatments have been possible because of access to patient data, resulting in positive benefits to people. Today, with the help of technology, researchers are making huge progress in areas such as genomics, which could revolutionise health and care for future generations.

However, with recent news headlines reporting issues with the way organisations, such as Cambridge Analytica and Facebook handle our data, people are concerned about how their information is used.

On 25 May, the NHS will give patients the choice to opt out of their confidential patient information being used for reasons other than their individual care. Together with ComRes, we polled 2,072 people in March, to find out more about their views and concerns on sharing their data.

Are people happy to share their patient data?

Overall, most people are positive about sharing their patient data. 73% of adults told us they would be happy for the NHS to use their information to improve the healthcare treatment of others.

When compared with other sectors including banking, retail and government, the health sector is also seen as the most trusted in terms of keeping people’s data safe and the most likely to use data appropriately.

People trust the NHS. However, the NHS often needs to bring in the expertise of other organisations to help process and analyse the data collected. Whilst the practical need to do this is clear, people have less trust in these companies. Two thirds of people tell us they thought they may later regret their data being shared with NHS partners, such as technology companies and universities. In light of this, the NHS needs to ensure it is transparent about who its partners are and how people’s information will be used.

More people are aware of data security issues

Just over half of the people we polled (53%) said they were more aware of data security issues than they were three years ago. Similarly, 57% also said they were more concerned about how their data generally is being used.

Yet greater awareness does not directly link to greater concern. The research showed that whilst younger people in particular were more likely to be aware of data security issues, they were also less likely to be concerned about how their data is used.

Did the hacking of NHS computers in 2017 have an impact on public trust?

The majority of respondents (85%) said they had heard of the hacking scandal that hit the NHS in May last year. Interestingly, more than half (53%) of people who had heard about this told us it made them less confident in the ability of the NHS to protect their data.

So whilst overall confidence in the NHS remains high, it is clear that specific crises run the risk of eroding public trust over time.

In contrast, positive data initiatives like the ground breaking Genomics programme, which is seeking to map 100,000 genomes of people with rare diseases, had much lower levels of awareness. They also seemed to have less impact in terms of improving people’s perceptions of how data is used.

The challenge facing health and social care

When the data opt-out comes in to force from 25 May all of us will have the opportunity to decide how our own confidential patient information is used.

All of the research we have done over the last few years, and indeed by others, suggests most people are likely to continue to allow the NHS to use their records to support the development of new treatments and to help plan services. Others will choose not to.

Importantly the opt-out system will enable people to change their minds at any time. It is therefore vital that those using the data don’t become complacent.

It is up to the NHS and social care sector to not just keep our data safe but to continuously show all of us why it is so important that we continue to donate our data.

What does the national data opt-out mean for you?

The NHS is introducing a new service to give you more control over how your confidential patient information is used for research and planning.

From 25 May, you’ll have the choice to opt-out of your confidential patient information being used to help the NHS improve how it runs services. There are strict rules in place about how this data is used and who will have access to it. For example, confidential patient information will not be used for marketing or insurance purposes (unless you specifically request this).

The NHS will still be able to use anonymised data (information about you with personal details removed).